ME: A survivors guide

Tips are my own and may not work for everyone – consult your doctor before making any major changes to diet or medications. Organise your medication for the week – I’m ashamed to say my mother does this for me. It’ll be easier especially during brain fog where you don’t have to think of what tablet to take. Say there’s a TV show you want to watch at 9pm but it’s too late for you? Well take an hour and half nap in the early afternoon because you’ll be refreshed but by the time 9pm rolls around you’ll be tired enough to sleep through the night later on. Don’t beat yourself up about flare days or having to cancel on friends – they should love you enough to understand, you already feel guilty and you don’t need added pressure on top. Make the most of good days even if it’s just a walk outside If you’re like me and whilst your body hurts but your mind is racing, let audiobooks/colouring become your best friend or treat yourself to a Netflix subscription. Natural sunlight is the best medication – typically the more vitamin D I have the more improved my ME is. Understand what’s a flare and what’s not – a diary is helpful thing to have especially when visiting the doctors. Flick the bird when someone says ‘Your illness isn’t real.’ You live it, they don’t. Keep hydrated Regular toilet visits help especially with all the meds. Anti depressants help – an invisible illness is hard to deal with Don’t get your hopes up about trials and new research. Connect with the chronic illness community on social media – you are not alone!

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Life in a wheelchair: A summary

Dear able-bodied people, this is the summary what it’s like to be in a wheelchair and I hope you never find yourself in that situation. But,if you do, be prepared to be the ‘inspiration’ to your friends, even strangers just for doing silly things like; taking a train ride without a ‘caregiver’. Of course you’ll face discrimination but of course ableism too and the list below is just a small insight:

1) When you take your wheelchair for repair, you won’t see it again for 300 years.

2) people immediately use singsong tone of voice when they see a person using wheels.

3) You always have to act grateful for help you didn’t need.

4) A shop isn’t accessible if it’s got a tiny step at the front.

5) People pat your head and bend down to you.

6) Don’t leave your chair in the sun, you’ll burn your bum when you get back in.

7) You will be confronted with the miracle in the alcohol meme and so called friends will find hilarious.

8) You always get the view of people’s behinds.

9) doorways being too small.

10) Ableism and inspirational porn.

At my mentors book signing

On this day my best friend gave me a typewriter; was the day I became a writer

The rest of thee photos show me in my wheelchair in New York City on a visit in 2014

All personal photos ©️ Rachel Marie.

I hope you all enjoyed this post and have learnt something from it. It is so easy to fall into these habits, people in wheelchairs are just people who want to get on with the day, not to necessarily be your inspiration or make you feel good about yourself if someone in a wheelchair is asking for help and doing it for praise or major props with friends and family. You don’t help someone because you feel sorry for them You do it just because you saw another person struggling to get through the day and needs a hand to make it better

You don’t get an instant helo around your head. Be aware of ableism, it can be very patronising and eeven border on bullying help us in the disabled community stamp it out by not doing the things on the above list.

Many thanks,

A Wheelchair user, who is also an author and has Chronic fatigue syndrome but she still remains to be bad ass with her humor and has a wardrobe bursting with vintage clothes… My friends think she has a shopping problem not just the vintage clothes for her on dying love for reading and needing a box to writing my friends think she has a shopping problem not just the vintage clothes for her undying love for reading and and need to buy notebooks to wwrite her short sttories in

By the way, my debut novel, carefree and consequence is available to buy on my blog for which will take you Amazon. The reviews speak for themselves. Available in paperback, hardback large print and, kindle. You don’t actually need a Kindle device to read this book you can just download it from your App Store. Or aask in your local library to order you a copy.

My second project is completing a list of writing prompts and putting them together in an anthology for sale. There are so many genres I can showcase then with this book. You can see my romantic side, you can see my funny side, you can see my spooky side, you can see mmy thriller side and you can see my serious side too. It will be a mixture of poetry and prose and trying to finish it by March 7 2021.

For now, go buy my book and see how you like my romantic side and love for the 1950s

Recommend a tearjerker 

My tearjeker as a kid would be Red sky at dawn however, now it is the Last day of Rabbif Hayes.

Red sky at dawn is about a sister who’s brother has severe Cerebral Palsy and a plethora of other conditions but, it focuses on the eldest sister and how she deals with the prejudices whilst being positive. Obviously having Cerebral Palsy  myself and readings age eight I had no idea the impact a disability has on family life. Despite the story looking hopeful troughout unfortunately, Ben passes away and I remember weeping for days because he never had a chance to prove his abilities and the community just saw him as a lost cause. I thank god for my family.

The Last Days of Rabbit Hayes is about a young mother living her last days as best she can with MS. This struck a cord with me as I was in the stages of being tested for MS. Thankfully that was not the case.The novel just helps you appreciate the little moments in life and the big ones because they all make you who you are today.